Our International Roundup provides a brief snapshot of some of the ME/CFS and long COVID research funding, clinical care and advocacy actions around the world in the last few months.
Research funding & conferences
- The Austrian WE&ME Foundation, established by the Ströck family who have been affected by ME/CFS, announced funding for 7 research projects investigating the biological mechanisms of ME/CFS. Each project must include meaningful engagement with people with ME/CFS. The funding is €120,000 to €180,000 per project.
https://www.weandmecfs.org/weme-projects/ - The International Society for Long COVID and Post-Acute Infection Syndromes (ISLC-PAIS) conference took place in Amsterdam in August. Speakers included Rob Wüst, David Putrino, Carmen Scheibenbogen, Ziyad Al-Aly and Resia Pretorius. The recordings will be available in the coming months.
- The UK PRIME (Building Infrastructure for Patients, Researchers and Industry for ME/CFS) International Symposium took place in Edinburgh in September, as part of the four year PRIME research project. Led by Chris Ponting, PRIME aims to establish new research collaborations in the UK and around the world. Online webinars and symposia are part of the project. Recordings of the symposium will be made available on Action for ME’s YouTube channel in the near future
https://www.actionforme.org.uk/research-campaigns/our-research-work/prime/ - The ME/CFS Research Foundation has invested €2.4m in seven new research projects. The funded projects include B-cell therapy, genetic determinants of ME/CFS, immunological subtypes of ME/CFS, inflammatory processes, and autoimmunity.
https://mecfs-research.org/news-researchfunding-projects2026/ (page is in German) - Open Medicine Foundation held the 10th Annual Symposium on the Molecular Basis of ME/CFS in the US in September. Speakers included Ron Davis, Chris Armstrong, Todd Davenport, Carmen Scheibenbogen, Robert Phair and Nancy Klimas. Recordings are available.
https://youtube.com/playlist?list=PLDFd3H01-3zw&si=8knhUIgpnqM5XJfd - The Severe and Very Severe Research Registry has been launched. The registry allows people with severe and very severe ME/CFS in Germany, Austria and Switzerland to register to participate in research from their home.
https://severe-me-registry.de (page is in German)
Clinical Care & Support
- The Science for ME forum collaborated with Professor Jonathan Edwards to produce a fact sheet about the management of severe and very severe ME/CFS. The fact sheet covers medical care, care at home, disability assessment, preventing deterioration and nutritional support, including tube feeding.
https://s4me.info/docs/Management%20of%20severe%20and%20very%20severe%20MECFS.pdf
Advocacy
- Action for ME and the 25% ME Group produced the Severe ME Report, exposing the reality facing people with severe and very severe ME/CFS in the UK. The report calls for urgent action to ensure safe and equitable access to life-sustaining care.
https://www.actionforme.org.uk/the-more-ill-you-become-the-less-care-you-receive-severe-me-inquiry-report/ - #MEAction launched Severe ME Artists Project 2026 to honour people living with severe ME/CFS. With more than 100 submissions, the project included videos, writing and visual arts.
https://www.meaction.net/severe-me-artists-project-2026 - A petition is calling for a Canadian study into the Lightning Process for long COVID to stop. The petition asks for participant recruitment to stop until an independent review of the study has been completed. The petition is still open.
https://www.change.org/p/long-covid-patients-deserve-better-pause-mcmaster-s-falcon-lightning-process-trial - Dutch patient advocate Anil van der Zee was appointed a Knight of the Order of Orange Nassau (the House of Orange-Nassau is the Dutch royal family). Nominated by Dutch ME/CFS associations, Anil’s knighthood was awarded in recognition of his patient advocacy.
https://nos.nl/artikel/2628647-fysiek-uitgeschakeld-maar-belangrijke-bron-van-kennis-lintje-voor-me-patient-anil-van-der-zee (article is in Dutch) - A petition to the Welsh government is calling for urgent action so that people with severe ME/CFS are not left without any care. The petition calls for an expert group of clinicians and people with lived experience to be established so that a strategy for ME/CFS can be developed, and for a lead clinician to be appointed to coordinate care across Wales.
https://petitions.senedd.wales/petitions/247069
